Conversations With Prostate Cancer Experts

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Ms. Nina Priebe is a social worker at the Cedars-Sinai Cancer Center in Los Angeles, California. She works with prostate cancer patients and their caregivers to manage some of the emotions sparked by the cancer journey.

Prostatepedia spoke with her about stress, depression, and prostate cancer.

Are there common themes that come up in your work with cancer patients? Are some specific to prostate cancer?

Ms. Nina Priebe: All cancer patients deal with the shock and disbelief of their diagnosis. They also go through feelings of lack of control, identity issues, sometimes role changes, changes in their family, and changes in communication.

Many things in their lives often have to be rearranged in terms of priorities. Side effects can have all kinds of impacts, both on emotions and psychological body image.

Many people have kind of an existential crisis: What does this mean? How did this happen? Why did this happen to me now? They’re meaning-making. They’re trying to make meaning of what happened. The caregiver experience parallels it in many ways.

In prostate cancer, men experience issues related to erectile dysfunction and incontinence. Some experience mood swings from the treatment. They may cry for no apparent reason whereas, in the past, they may have had a good sense of control over their emotions. That’s confusing and can be very overwhelming.

How does the caregiver experience parallel some of the issues that prostate cancer patients may find themselves facing that, say, caregivers of pancreatic cancer might not?

Ms. Priebe: A caregiver is anyone who helps. That help can range from practical kinds of help to emotional support. But the caregiver is also shocked by the diagnosis. Sometimes there were no symptoms. It was just a check-up. They too can have some denial or just some shocking disbelief.

Caregivers should be part of the treatment team. Because they’re not the patient, sometimes they put aside their own needs, which isn’t good in the long run. Some of them have their own medical problems, or they have the demands of elderly parents, young children, or special needs children, and the changing roles that may occur.

A typical change is that a man who always took care of the finances does not have time now because he’s in treatment or doesn’t have the energy. Role changes may occur and then change back again, but the caregiver balances his or her own work with caregiving.

Some issues that come up for prostate cancer patients and caregivers are related to stress and fear.

What role do you think fear plays?

Ms. Priebe: Fear changes, depending on the process. At the time of diagnosis, depending on the man’s history, fear can play a large role. My fiancé’s father had died of prostate cancer, so he was initially very fearful of death.

After that, the primary focus of his fears related to impotence. But my focus as a caregiver was on his survival.

You’re gathering information, going for second and even third opinions. I think the fear can be about making the right treatment decisions. Sometimes you have two and three differing opinions about what to do.

After treatment, there are fears about recovery for both the patient and the caregiver. Following that, people fear the cancer will come back. And then there is the anxiety around scans and blood tests every year or every six months.

Do you think the fact that there’s a fair amount of controversy over how to best treat prostate cancer adds to that sense of fear?

Ms. Priebe: Absolutely. In his case, my fiancé regrets his decision, but that’s because he had some adverse effects some years later. We see in hindsight. We didn’t know. He made the best decision he could at the time given what we knew.

What do you say to men and their caregivers? Do you have any advice about coping strategies or ways to deal with these emotions?

Ms. Priebe: As much as both of them can, I strongly advise them to maintain some part of a routine in their lives. I tell them to practice relaxation, which means different things for different people. There are all kinds of relaxation techniques, including hypnotherapy. But distraction, inducing relaxation as much as possible, and keeping some part of a routine are most important.

I have lots of patients who’ve gotten into adult coloring books. I have people that use guided imagery, which many of us use here at the Cedars-Sinai Cancer Center. Those kinds of things are very important.

What about support groups? Do you find them useful for men and caregivers?

Ms. Priebe: Some men who don’t have a good support system find it really useful. It varies. We have them, but many men just want to go on with their lives and they don’t want to focus on what they’ve been through with a group.

What about caregiver support groups?

Ms. Priebe: I think they end up being useful. People think that when they join a support group, they have to stay indefinitely. Sometimes, it might just be a certain stressful time in the process. Finding out that their feelings are normal—that other people have felt that way—can just be the reassurance needed to feel that they’re really okay.

What should patients and caregivers be aware of as they go into treatment or monitor themselves for recurrence?

Ms. Priebe: Being as generous with yourself as possible and allowing yourself to mourn are important. Until you mourn, you can’t go on to see: What did this bring to my life that might be positive? Have I now decided that different things are important to me? Whether something as simple as getting up and watching the sunrise or as complicated as a relationship that needed some repair, allowing yourself to mourn is the first step in being able to improve, adjust, and accept whatever has occurred.

You can’t really deal with anything until you acknowledge that you’re mourning.

What are some of the issues that come up for cancer patients after treatment?

Dr. Asher: There are physical issues and then there are psychological, emotional, and spiritual issues. In the physical domain, the most common complaint by far is fatigue, which may not seem very significant, but it often has a psychological component. It is consistently a major issue in cancer quality-of-life studies. Fatigue tends to be the most distressing symptom of all of the different symptoms that cancer patients go through.

Not pain?

Dr. Asher: We generally do a much better job of managing pain. And not everyone has pain. For example, of those with metastatic prostate cancer all over their bones, only 22% or so have pain, whereas fatigue is ubiquitous. Whether you’re going through chemo for breast cancer, prostate cancer, pancreatic cancer, or any other type of cancer, it is almost impossible not to experience some fatigue. Fatigue is what really keeps people from doing things that are meaningful and important to them, so it tends to be the most distressing symptom, perhaps because it’s so common.

Is fatigue always directly associated with a treatment, or is that fatigue due to treatment plus any stress, anxiety, or depression the person may be having about the fact that they have cancer?

Dr. Asher: This is why I find this a fascinating problem: it may involve all of these facets together. It could be just the cancer itself, so you could have fatigue before you even start any treatment. Clearly, chemo and radiation cause fatigue. And it could also be the emotional stress— not sleeping well, nutrition changes, and being in pain all the time. It’s exhausting. Depression and fatigue have a lot of overlap, and the challenge is teasing apart all of these different factors and coming up with a plan once you sort them out.

Are there any other issues common to multiple cancers?

Dr. Asher: Everyone has fear of something, though fears may be different. For some, it just may be the fear of death, fear of the unknown, or fear of becoming dependent. Many fear losing independence and having to rely on or burdening their loved ones. This kind of fear is quite common.

In the cancer world, you hear a lot of talk about stress, but you very rarely hear people talk directly about fear. Is stress a code word for fear? Or is it different?

More and more studies show that stress doesn’t really hurt us or kill us, but our perception of stress is more impactful. Studies show that people who perceive stress as something that allows them to rise to the occasion, perform better, or overcome a challenge tend to have higher survival rates. If someone views stress as something that’s going to hurt and negatively impact them, that perspective tends to have a spiral effect and is associated with higher mortality rates.

Over and over, studies show that chronic loneliness is associated with a poorer cancer prognosis. Chronic loneliness is a more negative risk factor than this loose idea of stress, which is so dependent upon one’s personal interpretation of the phenomenon. I guess you could tease out stress to be both fear and loneliness, though. Dr. Asher: It could be fear. It could be loneliness. It could be a sense of poor self-efficacy.